The other element that was helpful is that we didn't have other people to meet there. I know that sounds so antisocial. We LOVE play dates and meeting up with friends, but sometimes it's stressful to plan ahead for Will. It's hard to commit to something in advance when it includes Will. It's not because we don't want to go, we REALLY want to go, it's just difficult because there are so many unknowns.
We often don't even tell Will about any big plans because we have had to cancel or reschedule because something happens with his health or he just wakes up really off. That, and he will repeadetly ask and perhaps even whine (!) about when it's time to go or wanting to hurry up and be there.
At times I feel like a total flake because I feel like I can't make plans, keep plans, show up on time, or be an active friend. I used to be punctual and a planner. I still am a huge planner, but now I'm planning for like 10 different scenarios in my head before I can solidify a plan.
I'm not sure how this post went from a Texans game with fun photos to a cathartic writing lesson for me on trying to be a good friend without being a huge flake.
At any rate, thanks to our friends who put up with our new normal - sometimes that includes flaking out, rescheduling, reworking, leaving early, coming late, not being able to have a conversation because I'm making sure Will stays safe or 100 other scenarios :-)
Hi, I have just found your blog and have enjoyed reading it. My 2.5 y/o son has just been diagnosed with Leigh's and we are seeking medical help outside of our state as there are not any on our area familiar with Leigh's. If you would not mind, I would like to contact you via email to ask some questions. We are desperate for help. Thank you in advance.
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